Physical Health Issues and the Ordeal that Comes

My husband was diagnosed with asthma while he was in the military where he was exposed to burn pits and environmental exposures during several deployments. In the last 5 years, every year, his asthma has only gotten worse. In the last year and a half, it’s resulted in over 8 ER visits at the VA. The last ER visit was in August of last year.

This time, I begged him to go to our local ER instead of the VA. This ER ended up admitting him for two days. During that hospital stay, they did more for my husband than the VA did in the last 10 years. One of the things the civilian hospital did was a CT scan where they found lung nodules and his thyroid enlarged.

We are now almost a year later, and his breathing only seems to be “good” when he is on prednisone. He also takes a Nebulizer daily, along with a daily inhaler, and has a rescue. He waited months to make a follow up appointment with the civilian doctor they sent him to. I think it has been avoidance and his PTSD that complicates things. He finally has an appointment in August.

The nodules concern me. But the VA doesn’t seem to be in a hurry, or seem to care after we gave them the reports from the civilian hospital, or even after the numerous VA ER visits. When it comes to his physical health, the VA has done such a poor job. Their only answer seems to be to throw medication at the problems, instead of actual treatment. It’s so stressful and frustrating dealing with them on EVERYTHING. In addition, the wait times, even prior to COVID, are absolutely ridiculous. It’s a full time job, on top of my full time job, caring for my husband, and raising a family, while dealing with them.

In the 10 plus years he has been at the VA, he has had half a dozen or more primary care providers. And each time, everything starts back over, and things fall through the cracks. He has yet to see a pulmonologist at the VA after being in their system for 10 years, diagnosed with asthma, and it brought up at each visit. He finally got a referral last year, but still hasn’t seen anyone! The pulmonologist said he needed a current pulmonary function test. I told the nurse when she called, they have a copy of 2! And we have yet to hear anything back.

Honestly I haven’t pursued it because every time I call, I spend a minimum of 45 min on the phone, most of the time going in a round Robin, hang ups, and not getting to who I need to. It’s time consuming and draining. We are lucky enough to have private insurance, so I have pushed to have him seen outside the VA. However, we are still spending money for deductibles, co-pays and co-insurance. But he gets seen much faster. And if, God forbid, it IS cancer, hopefully we can get an affective treatment plan in place quickly. I feel like if we waited on the VA, he would die waiting to be seen.

This Time of Year

As many of you know, my husband has PTSD from several deployments overseas in the military. What some of you DONT know is the hell that can/does come with it. This month, May, is mental health month, and starting tomorrow, June 1st, is PTSD Awareness Month. This is also a traumaversary month for my husband. Generally, Jan-June 1 is an exhausting roller coaster ride filled with sleepless nights, waking up not knowing who I’ll wake up to, locking down car keys, and credit cards, keeping 2 young boys quiet when finally, he does sleep.

It’s tiring, stressful, frustrating and lonely. It feels like you are fighting the world…fighting alone. You fight to keep your loved one alive, hanging on for dear life in the constant ups and downs. You fight the VA, who fails to see the trauma your family endures, and wants to lower their rate because they think, magically, your spouse is better. You fight alone, in silence, screaming on the inside, wishing the world tried to see the pain, and trauma endured, getting annoyed when you hear civilians thank a veteran or saying how they support the troops, with little action put to words. Words that feel like a saying to make them feel better, without doing any real work, or trying to learn, truly supporting veterans and their loved ones.

By Memorial Day, I’m exhausted, and depressed, frustrated, on constant high alert and still hanging on for dear life, having continually tried to keep a sense of normalcy and keep the ship that is our life, afloat. No one sees the daily struggles, the stress, the secondary trauma.

Most who meet my husband won’t know. They won’t know that he is “off” at the moment. His affect changing. They won’t know that he jumps out of bed between 2 and 3 am, like clockwork during this time. How he gets addicted from the adrenaline pumping through his veins. So he fights the meds, the sleep, and the eventual depression that he knows will come with the crash.

After 2 days of no sleep, my husband that I know and love begins to fade. By the 3rd day, a different person, more hyper, stubborn, almost a force of nature, takes hold. The speech becomes more rapid, more moody, more brash and sometimes unpleasant. He gets to a point where he won’t listen to reason. His decision making skills are questionable. Previously, during these blights of sleepless time, it has resulted in buying expensive items, to include expensive cars, we can’t afford. It’s resulted in locking down his credit, and limited his access to credit cards and our main accounts. In his clarity periods, he understands, but in times like these he gets mad, and forgets why these plans are in place. And although he wouldn’t admit it, I believe he has more thoughts of suicide, from comments he has made.

His memory, that’s another thing. He often repeats information or conversations we have continually had, especially during these periods, forgetting we ever had them. It’s a recurring theme. He doesn’t understand why I get annoyed. I try not to, but, my own trauma is in play. We almost play the same themes over each year, like a broken record. Same thought construct, same war movies, same trauma that comes.

Some things have gotten better. I mostly know what to expect. Our safety plan is working better and we are more prepared. We keep an open dialog with his psychiatrist. But, it doesn’t make it any easier. It doesn’t make the trauma we go through yearly, any less tragic than what it is. It’s hard to talk to people about what we go through, especially if they don’t understand.

We have simply been trying to survive the past 10 years, between his PTSD, and now, his lung issues. It’s been one foot in front of the other, one day at a time, even one hour at a time. The world doesn’t see what veterans, and their family, really, go through with having a loved one living with a mental illness. It isn’t their fault. The person they are when the episode takes place, isn’t who they are. It isn’t the person that we know and love.

Safety Plan

One of the things I am finding important is coming up with a safety plan.  It it is a good thing to have, and discuss with your spouse.  I was recently given a blank safety plan to fill in/tweek with what will fit us.  Once complete, it will be printed out, and put up in certain areas of the house to remember what is to happen if we get to that point where we have to draw the line.  Below is the blank safety plan that I was given, and was told I could share.  Please feel free to save it, and create your own. For us at the end I will add at the end what will happen if none of the items listen help, which likely means inpatient is the result.

BLANK COPY SAFETY PLAN

They Sacrifice

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Don’t think our service men and women don’t sacrifice?  Think again.  Not only do they sacrifice themselves when they go off to war, but while gone, they sacrifice time with their family, missing out on birthdays, holidays, births, deaths, and special moments.  They miss that first step their child makes, or the first word, or even the first day of kindergarten.  From war, many lose a piece of themselves, some physically,  some mentally, some both and some lose their lives. 

While yes, we do have a volunteer military, and our loved ones volunteered for their country, they did so so yours wouldn’t have to.   If not for the men and women who volunteer for the war they go to (justified war or not), those who don’t want to go, would be forced to do so.

So while you may not agree with their mission, you can still support the ones that fight.  They are still owed our gratitude and our respect.  They have sacrificed so much, and are asked to continue to do so.  Isn’t it time we sacrificed too?  For many, the scars are deep, and for some, invisible.

The support shouldn’t stop once they are home.  Support our Vets should be just as big of a catch phrase and action as Support our Troops. 

We lose 22 veterans a day to suicide.  Shouldn’t it be time we tell them #youmatter?

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Ways to help

I often see questions from civilians who do not have a loved one that is a vet or a service member,  what can they do to show they support the troop by more than simply saying it.

As the spouse of a veteran with PTSD, here are some of my suggestions.

Get involved – Many communities are creating organizations to touch on military and veterans issues.

If you are in a church, find a way to create programs to help vets and their families. For example, create a children’s night. Have a safe place the parents can drop the kids off, knowing they are safe, to give the kids a chance to play with other kids, and a chance for mommy and daddy to reconnect.

If you are a pastor, educate yourself on PTSD, and get training so you can help those in your congregation that may be suffering.

If you own a business, hire a vet.

If you are a professional (Dr., psychologist, therapist, lawyer), offer pro bono work to veteran’s and their families. Many vets and their families are going without healthcare. Many need a lawyer because they have gotten themself in trouble, or they have family issues, or need help with appeals, ssi or initial filing.

Find ways to help them. Find out what their needs are. Sometimes they just need someone to talk to. Be there for them. Some are coming home to no help or loved ones. Try to become a friend to them. There are many ways people can help. When you say we support our troops, don’t just say it, but mean it.

The last suggestion I have is, educate yourself on invisible wounds.  Help us raise awareness, and join us in fighting for them.  Write your congressman and senators, demanding action.  Demanding more help, and for them to start showing their appreciation for our vets.  Find out which politicians are against veteran’s benefits, and NO MATTER WHAT PARTY THEY ARE IN, VOTE THEM OUT.  We do not need politicians up there who want to take away the little benefits that our veterans do get.  They have no business in Washington.  I dont care what party they are in.

Support our vets

A Journey

Here is an interview my husband and I sat down to last year whenever I was first starting the local peer to peer support group.  We stepped out in faith and outside our comfort zone.

We met with Laurie, from Channel 3 here in Hampton Roads, to participate in an interview to raise awareness and inform those in our area about the support group I am starting, PTSD, and its effects on the Veteran and their family.

In doing this interview, it was not easy for either of us. When you put yourselves out there, you are worried about judgment from other people. Hesitation is what the devil wants. The devil will try to hold us back as much as he can. I realize this is not about us, but helping others through what we have gone through. I do not want any other spouse to feel as alone as I did. We had to step out of our comfort zone, and step out on faith, in hopes of helping others who are going through what we have gone through.

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Channel 3 interview

Channel 3 interview – Web Extra

 

 

 

PTSD is like a pickle

I remember when we first started the process of getting my husband into the VA, my husband’s case worker gave an analogy to describe PTSD.  PTSD is like a pickle.  You can take a cucumber and turn it into a pickle, but you cant take a pickle and turn it back in to a cucumber.  There are several types of pickles; dill, sweet, bread and butter, “wickles,” etc.  It is up to the person to decide what “type of pickle” they want to be.  You then learn to love the taste of the pickle, but it will never be a cucumber again.  That analogy has stayed with me.  I know that my husband is forever changed, and the person who I knew is gone.  He still has parts of him remaining, but he is forever changed. Learning to accept and love the “new pickled” him has it’s challenging moments, but I still love this man with all my heart, who he was, and who he is now, “pickled” and all.

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Asking instead of Telling

Something I have found myself doing as of lately, is telling my husband what to do, instead of asking him.  After the behavioral issues we have dealt with over the past few years, I have found myself treating him as though he is my third child, and at times, it doesnt help things.  In fact, it can hurt.  I know for myself that I dont like being told what to do, like I am a child.  Why should my husband be any different?

One of the important things I am finding and having to remember is he is still an adult.  It is a hard balance going between behavioral issues, back to good, and having to learn to trust his abilities again.  I can honestly say I dont know that I will ever get back to not having questions about behavior, or decision making, but for the sake of our marriage, I have to learn not to treat him like a child, and TELL him what to do.  Asking him to do something goes a long way, along with a please and thank you thrown in there.  It comes down to respect, and I respect my husband

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